update about , now 11

[Guest guest]

Hello Group,

happy be-lated Thanksgiving.

age 11 now.

had problems at age 7, formally diagnosed at age 8 had surgery

heller w/ DOR fundo at age 8 @ Cleveland Clinic w/ Dr Rice

seems to be doing GREAT!!

WE still avoid hotdogs, and ketchup.

Other dense meat has to be cut into " toddler bite-sized " portions.

Medicines are taken chewable or liquid.

( Remember adults can go to childrens section to get liquid over the counter

medicines, like vitamins, etc.)

sleeps with a many pillows ( elevated).( others have put wedges/blocks

under the head side of the bed)

For foods to avoid, check things that cause reflux ( opens the esphagus) if

experiencing heartburn.

Anyone worried aboout adding calories, you can add vanilla slimfast to a shake,

( to boost the calories), and add extract from the baking aisle to make new

flavors. ( banana shakes are good).

Anyone who bakes, you can add the slimfast into cookies, like pizellas and that

will boost the calories.

The shakes and pizelles I used when my daughter was really losing weight, we

also allowed ice-cream for breakfast when things were really bad.

soups pureed seemed to be good , too.

crunchy foods that turn into " sand " were good like cherrioes, and corn chips.

Keep M & M's or hard candy ( both to suck on)handy, when you don't eat you get low

blood sugar and can faint or black out.

I tried to make alot of things from scratch, less processed it did seem to help.

If there are any new children patients I would like to extend a hand.

Of course, I will answer anyone's questions. It is hard being the care-taker

role and guessing what is going on, especially kids who just feel crappy and

weak all the time. So, I've tried about everything. All I can say is I'm proud

of everyone for standing up for yourself and seeking the support and information

to maybe make your lives a little better. Hang-in there, and I still pray for

Technology and Science to catch up.

Dana ( mother) in VA.